Hello all. I recently signed a contract with a book company to write about my and other people's experiences with lupus. I have completed more than half of the book already and should be finished in a month or so. I would still love to get interesting comments from anyone on this website who would like to contribute. You can friends and message me if you want to help with a few comments about your condition, concerns, coping mechanisms, etc.
Thanks,
Thomas Franklin
Does no one think it is a good idea to write a book that brings more awareness to lupus? I would like to let others not familiar with the disease know how serious it is and perhaps force outsiders to see lupus sufferers deserve compassion and consideration. Does anyone feel there is a target audience that would want to read the book? There are 2 million sufferers in the U.S. alone.
Hi Thomas Franklin,
Many on here aren't sure what they have, as diagnosis can take a long time. Also, I do think that some people are concerned about their medical history being public, which I can see.
Also, I don't think that this forum allows for solicitation or posting email addresses. I'm not sure if this would apply to your book, so you might want to ask a moderator.
Other than that, good luck with your book. (I'm not diagnosed with lupus, only suspicious of it, so I can't speak knowledgeably about the topic.)
Take care,
Jill
I'm hoping you include a chapter that tells the of the horror show the families have to live with when a loved one has lupus. My own lupus is/was life threatening, I can't imagine how horrible it must've been for my husband to come home from work to find me near death, or how horrible it must've been for our kids to have to be told we don't know if she will ever come off the vent and the hundreds of other horrible things they've had to watch happen to me over the last 20 plus years.
That kind of topic will certainly be a major part of what I am trying to convey - how the family and friends treat the sufferer and how it affects their lives as well.
Thomas Franklin (Paul)
hopeful said:
I’m hoping you include a chapter that tells the of the horror show the families have to live with when a loved one has lupus. My own lupus is/was life threatening, I can’t imagine how horrible it must’ve been for my husband to come home from work to find me near death, or how horrible it must’ve been for our kids to have to be told we don’t know if she will ever come off the vent and the hundreds of other horrible things they’ve had to watch happen to me over the last 20 plus years.
Hi Thomas,
I feel that the different reactions from family is by far the most difficult part of this disease. Having to decide who is a positive influence vs negative is important and heartbreaking at times....including parents and children. I think it is important topic.
Good luck to you on your book. I have considered doing this myself.
DeAnne
Hello. Thanks for your interest. I agree with you about family and circle of friends. I am definitely writing about that with my experience and a few others. I appreciate your response. If you have anything specific to add let me know.